A Little Something Extra

Thursday, November 1, 2007

Miscellaneous thoughts

It's hard to believe it’s been almost three weeks since we found out our baby’s diagnosis of Trisomy 21 (T21… Down syndrome). But I think I’m doing better. I can occasionally talk about it without crying. I’ve received a lot of encouraging stories from parents of children who have that extra chromosome and I’ve gone to some of their blogs. I’ve found out I’m not alone… others have struggled through hearing their baby has Down syndrome. I still believe we made the right decision for us to find out ahead of time. It’s funny, actually… many people have questioned the decision with a statement similar to, “I’m sure the pregnancy hormones don’t help your emotional state.” As if post-partum hormones would be better! :-)

Along with some great family stories, I’ve heard some horrific comments made to parents of children with T21. One mom said that she had a woman ask her in a not-so-friendly way whether she knew ahead of time that her son had Downs. It wasn’t curiosity-based, either… it was asked in a judgmental way, as if to say, “Why would you actually CHOOSE to carry this baby to term?” Before we found out our boy’s diagnosis, I cried when I read that between 80-90% of babies with T21 are aborted when their parents are given an early diagnosis. But we all want the “perfect” family, don’t we? And even though I cried when I first heard that statistic, it unfortunately doesn’t surprise me anymore. Without a firm stand that you won’t ever consider aborting a baby, it would be way too easy to listen to a doctor tell you how difficult life would be with a child who has “special needs.”

Those first days of emotions after finding out your baby has T21 are so intense and overwhelming. And many doctors encourage termination. You’re reminded that you’re starting to show… you’ll feel the baby move soon… it will be easier to terminate before you get “attached.” Reality check! You’re already attached! But, as I mentioned before, I have a slightly better understanding of families making that “choice” now that we’ve been through that low point of hearing the news. Don’t go freaking out on me now… we would never consider it for our family. God has chosen THIS child to be ours to raise for His glory. But I just wanted to share so that if you ever hear of someone making that decision, don’t rush to judgment. You don’t know where they were emotionally when they made the decision. And there are plenty of families who want to adopt children with Down syndrome. But let’s face it… in our society, there’s almost a worse stigma attached to putting a child up for adoption than there is for “terminating a pregnancy for medical reasons.” Sad commentary on our society, huh?

Okay, stepping away from THAT touchy subject… Let’s talk about our little guy. According to what I’ve read, only 25% of babies conceived with T21 actually make it to birth (taking out the 80-90% termination statistic I mentioned above). I’m guessing that’s due to a lot of the health-related issues that are more prevalent in individuals with that extra chromosome. And we had some other issues with this pregnancy as well. I was on medication when this baby was conceived that caused me to have low estradiol and progesterone, which could have caused a miscarriage. I was on supplements of both during first trimester. At 5.5 weeks, even though we saw the baby’s heartbeat on an ultrasound, my doctor told us there was a 50/50 chance I would miscarry due to a subchorionic hematoma (SCH). I then had a few other SCH’s during first trimester. But our little guy has survived all of that (besides the fact that we weren’t supposed to be able to conceive “naturally” anyway!). He’s a fighter! And a blessing.

I’m a planner. Always have been. I look five steps ahead (often drives Mark crazy). So not having a reasonable level of confidence that our little guy will, for example, be running by age four is WAY outside my ability to cope. I guess that’s the point.

I’ve asked the question of “Why me?” Not from a victim standpoint, surprisingly. Rather, simply wondering, “How am I prepared for this?” It was almost a joke the first time I did a spiritual gifts assessment through church. The gift of mercy was low on my list. And since that time, it hasn’t risen much in the ranks according to recent assessments. So how in the world has God prepared ME to raise a child with special needs (not sure how I feel about that phrase… don’t all children have needs unique to them?... but I don’t know a better phrase…)?

I wonder what that means. Could it be that our little boy doesn’t need me to be as merciful to him as I think he might? Maybe more than that, he will need other qualities in his mommy, such as being the one who will stand up for him and be his advocate. And I’m sure this little guy will teach me more about mercy than anyone else could. But still… I know so many others who are more prepared than I am, such as a special ed teacher friend, a speech pathologist friend, an incredibly empathetic friend, or a laid back friend. What do I bring to the table? I can't think of much, so I guess it must be faith in God. Better work on that too!

7 comments:

Alicia Llanas
said...

yes at the end is all about faith

i new i was pregnant with Elias until I was almost 20 weeks pregnant! it was a big shock knowing i was pregnant and i didnt knew! our biggest concern were the health. I tood lots of medicines during a month due to a disease i had, got vaccined, i also were into nutrinional suplements etc! and the most we could do was to pray for him to be healthy.

and he is. Elias have DS, but was and is the healtier boy I've ever met!

I often think that the reason of me knowing until later was because God had a perfect plan. and he did. thru this 2 years and 8 months i've seen how things work out in a time that i cannot believe, but that's how God works... in his own perfect time!

Im sure you will be a great mom! and Im sure that Im not better mom than you, and most of it: GOD KNOWS WE ARE NOT PERFECT, that's why we need him, sometimes we just need to be humble and admit our deficiencies and let God work through us.

I have changed in two years and 8 months, more than I have changed in my life (I have 23 years) but mainly I have learned to have faith, real faith.

and remember that sometiems our plans are not God's plans! but remember that God's plans are always perfect.

I want to echo Ann's comments-- the fact that you know so much already amazes me! This will allow you to deal with every hurdle in an orderly manner. You are going to be great! And good thing we don't have to do it alone...you will have your village around you to help you.

My web wanderings to find that erma bombeck link (google erma bombeck the special mother--it's all over) had me also CRYING VERY CATHARTICALLY this morning, posting it and her if I had my life to live over poem to notes on Facebook! Plus I want to read ever book she wrote.

Jennie & Mark's blog

Welcome to our family blog. We have three boys: Nathan (7), Micah (4), and Matthew (3). Nathan is our energetic, sports fanatic first-born. Micah is our charming little guy, who happens to have an extra 21st chromosome (aka Down syndrome) and multiple associated health issues. Matthew is our big-boy-wanna-be. I started this blog the day after we found out that Micah has designer genes (Trisomy 21, aka Down syndrome). We've been through a lot of ups and downs (and a lot of time in the hospital), but God is faithful and continues to show His love toward us.